Life with a Tubie

In honor of Feeding Tube Awareness Week, I thought it would be interesting to share what it’s like to have a child with a feeding tube. Yes, there are differences in how we do things sometimes but not as many as you might think. Not every family’s experience is the same so there may be some significant differences between our routine and someone else’s.

The first thing we do when our son wakes up is feed him. We have a schedule but it’s flexible enough we don’t need to wake him earlier than he’s ready to get up. He still drinks from a bottle even though he’s almost 2 years old because, typically, kids drink less when they transition from a bottle. Once he’s eaten as much as he wants we vent the air out of his tube. After, we feed him the rest of his food by gravity. We attach a syringe to his feeding tube without the plunger and pour his formula into the syringe. We allow his stomach to accept the food at whatever rate it’s comfortable and read books while he’s being fed. For most of this process, he sits or lays in my lap. We read two to three books during the remainder of the feeding keeping him relaxed and comfortable. We repeat the feeding process every three to four hours.

It’s safe for our son to eat, so we offer him food throughout the day. He has a medical drink which comes in a juice box with a straw which he enjoys. He gets cereal, puffs, and animal crackers to nibble at least twice a day. We use a hollow chewing tube to nudge some of the cereal or puff back into his jaw so he gets the sensation of chewing with his back teeth and gums. So far he has not been able to eat enough of these things to allow us to reduce his formula volume.

After his second formula feeding, we get ready to leave while his stomach settles. We change him out of his pajamas if that hasn’t happened already. The diaper bag gets checked to ensure he has, at least, one spare set of clothes and some rags. We bring along a juice box in case he gets thirsty and some animal crackers or puffs in case he wants something to nibble. This is when we run errands, visit with the physical or occupational therapist, or attend doctor’s appointments.

We try to get his third formula feeding in before he goes down for his midday nap. Sometimes it’s successful and sometimes not. If fed too closely to going to sleep he’ll get sick in his bed after about an hour so it’s not worth it to force the feeding if there’s not enough time for his stomach to settle. If he’s too exhausted we feed him as soon as he wakes up. If we do get the feeding in before the nap, he frequently gets fed as soon as he wakes up as well.

After feeding him, we allow his stomach to settle and have another chance to go out for doctor’s appointments or run errands. Typically, we don’t plan anything around lunch time. It’s just easier to take care of things in the morning or early afternoon when he’s well rested and fed. If we don’t need to run out we work on his therapy exercises. We climb stairs, crawl, and color with crayons. We also fit these exercises in throughout the day as time permits.

If we can, we fit his second to last feeding in before he goes to sleep. We also give him the opportunity to have a bite or two of whatever we eat for dinner if he’s awake and willing to try something. Depending how much therapy we’ve done and how good his nap was he may be asleep significantly before dinner is ready. We still offer him some snacks and his juice box before bed.

Once he goes down for the night we feed him with his feeding pump. He sleeps through it. The beeps and pump noises don’t seem to bother him. His father and I spend a few hours together before going to bed and starting the same routine all over the next morning.

Really, the only difference I see between what we have to do and what any other parent would have to do is the preference to be home for his feedings which can take anywhere from 30 to 45 minutes each. We CAN feed him elsewhere but prefer not to as he’s at the highest risk of getting sick in the first hour after he eats. That isn’t necessarily a huge deal for people with hardwood floors but the vomit is really tough to get out of the carpet.

There’s no need to feel sorry for our son. He can do anything any other child can do. The feeding schedule can make things awkward but the only accommodation we need is to be given a little bit of flexibility when scheduling get-togethers. It’s preferable that we be able to feed our son at home so it’s significantly easier for people travel to us when possible. Any additional cooking or hosting required is a minor amount of work compared to hauling all of the necessarily supplies and formula to be able to visit somewhere for more than a few hours.

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